I admit I have a hang-up. Every time I hear someone say “caretaker” about a person who takes care of an elderly family member, or one who is sick, I cringe. While it’s true that there are multiple definitions of “caretaker,” including “one that gives physical or emotional care and support,” such as someone serving as caretaker to young children, the other two definitions are: “one that takes care of the house or land of an owner who may be absent” and “one temporarily fulfilling the function of office,” such as a caretaker government.
Another definition and my association of the word “caretaker” is someone who digs graves or maintains cemeteries. So, I prefer the word “caregiver.” But that term also is not straightforward or all-encompassing.
A “caregiver” is an unpaid or paid person who helps another individual who has impairment with his or her activities of daily living. Caregiving is most commonly used to assist people with impairments related to old age, disability, a disease or a mental disorder. Typical assistance provided by caregivers is managing medications and communications with the medical team, helping to bathe and dress someone, or doing household chores such as providing meals and bill-paying for someone who cannot manage alone.
I’m not the only one who gets confused about the term, “caregiver”. Organizations that provide cancer support groups for those with the diagnosis, often offer “caregiver” support groups, too. But here they are referring just to family members who live with someone who has cancer, not necessarily people who must provide daily care.
Let me tell you: Not everyone with a cancer diagnosis needs any of those duties handled by someone else. Much of the time, the individual with cancer can handle everyday life by him or herself. Only when he or she is undergoing some kind of treatment such as chemotherapy or radiation, or having surgery, is special care needed.
In my case, I have needed rides when I could not drive and friends have cooked meals for me during chemo or as I’ve recuperated from surgery. But that’s always been temporary assistance, not the everyday norm.
There is really no good, specific term for those who live with a family member who has cancer. Yet, every member of a family is affected by a cancer diagnosis. There’s additional stress if nothing else.
Recently I learned of a relatively new organization called the Cancer Experience Registry. This group was established because of the lack of space provided to hear the voices of caregivers. According to the organization, “These individuals, family members, partners and friends feel the impact of cancer. Their lives are changed. Their social lives, work lives and intimate relationships are challenged. Caregivers are frequently cast into unfamiliar and difficult roles as advocates, information seekers and treatment providers for the people they love. Caregivers often live in the shadows of the cancer experience. It was time to provide a special place for them.”
In December 2014, the group launched the “Cancer Experience Registry: Caregivers.” Since then, more than 200 people have registered and agreed to complete a questionnaire that identifies the issues they face and to assess their impact. Their goal is to have 500 members of the “Cancer Experience Registry: Caregivers” by June 2016.
The survey covers many topics, ranging from emotional and physical health, the cost of caregiving and unmet needs. The organization says that, so far, the responses “reveal a deep need to understand the caregiver experience and focus more resources specifically on this group of people.”
With a population that is increasingly aging, the role of caregiver has become increasingly needed and recognized. It sounds like it’s about time.